How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

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Senior Member

My name is starlily88. I have been on here with previous post on how Prednisone "cured" my brain fog, temperature, etc. This was temporary.

I have been quite ill since March 21, 2018 - on top of my ME/CFS. Symptoms include high temperature every day, thyroid or lower neck very swollen - very painful each l day, pain when swallowing, terrible sore throat (almost like it is past my larynx. Deep "cough" that ends up wheezing, now it is non-stop non productive cough/wheezing, bad left ear ache all day/ nite. Now quite dehydrated - shortage in ER hospitals - been to ER 2 times - can barely stand/walk without loosing my breath. I feel like I am being strangled, no oxygen.

I saw my Internist end of March - had fever - put me on antibiotics
Saw my Endocrinologist April 9th - said my thyroid was so swollen, probably infected..
Would not run full thyroid panel, refused to order thyroid ultrasound (shows nothing he says).
Ordered no blood tests.

Had labs done May 15, 2018. My ENDO never read them - office told me he hasn't read labs from one month ago on his patients- as if this exonerates him!!

II begged his assistant to ask him to read my blood labs.
I had results emailed to me. My results were not good.
I have no IRON, Interleukin-6 so high,thyroid results bad.My sed rate is the highest it has been in 30 years - the interleukin - 6 is so high.
My ENDO said I can't be on Thyroid meds - they will 'leak"

Endo says go on beta blocker Atenolol 25 mg day. Said I have thyroiditis (yes have had this 15 years).
Endo says "you will be sick with this infection for another year"
Atenolol will slow heart rate - and make you extremely tired. (his words not mine)

My Dr neighbor had to get me up to my flat a week ago - I have been homebound but had to go to dentist (after my dentist told me I had cavity on tooth that was already filled 3 sides in Sept 2017). I was very weak.
I could not walk 4 steps without loosing breath, I could not open door to my building - so sat there till my neighbor came home from work.

He told me there is no medical word for LEAKING. He laughed - said my ENDO just wanted me to stop asking questions - he says 99% of patients NEVER ask question to their drs.

He said never heard of beta blocker curing thyroidis - and me being on High blood pressure medicine (given to me by my Endo) combined with beta blocker would drop my blood pressure so low I would be in possible danger as my blood pressure is pretty low. (90/60 or 90/70). (on my blood meds only). He doubled dose.

I made appt with practice near me months ago because my cousin told me his friend started practice, and was excellent. They don't accept my insurance but I am desperate. She won't accept new patients

Only 3 drs would accept new patient so I grabbed this. He is Internist/Endocrinologist.
Since I have no memory - I wrote down my 6 symptoms.

I brought out a tiny piece of paper. He objected, "no no put your paper away, do this from your memory"
I told him I don't have memory which made him even angrier.. He freaked out on how I can't remember the dates my weight was 99 lbs - which was about 25 years ago for 4/5 years. I am now 105 lbs so who cares. He asked this question so many times - I thought I was in a court room

He remarked that he needed a "PhD to handle my medical problems" even though I did not divulge every detail of my long disease list except the most important. I stuck to last 3 months.

He was nasty to me - even though I did not talk, expound, and answered his questions as best as I could. Then when he found out I had had breast cancer 19 years ago (lumpectomy, no chemo, no radiation) he almost had heart attack, and yelled at me - like I was withholding.

He wanted to know how much of this I found on the internet which is zero.
But he did say some things no other dr would say or do.
.
He questioned why not one dr who saw that Prednisone worked to fix me - did not proceed to test my cortisone levels - this puzzled him greatly. Now this can mean absolutely nothing because we all know that Prednisone (raising cortisol levels, getting inflammation down) works for first time.

He thought about " I wonder if this is extension of your ME - getting worse" which is viable.
He immediately ordered an ACTH test for this Wednesday at lab in his office. I know this won't show anything - and this is not cure for CFS.............

But then he stated that if "you do NOT bring me the 4 drs evaluations you saw I will NOT proceed with further medical work on you. I told him my Internist of 25 yrs stopped all medicare patients on April 1st but HE did give me DVD of all my records.

He told me "No I will NOT take the DVD - I am not going thru all your records. You have to call him".
I can't call this guy - he wants $1600.00/year from Medicare patients to treat them.
He stated if all 4 drs did not give him my last evaluation in last 3 months - he would not go ahead with medical help -= I am shocked at this.

I did call 3 drs - had them email last evaluation - but my computer broke for a week.
It would not download anything.

I will take ACTH test this Wednesday. Beyond this, no matter what it shows, it will not answer what my new symptoms are from.

I have been to 2 ERs - one gave me chest x-ray - said nothing wrong with you.
Second ER - nope you can't have saline, only did chest x-ray told me to go home.
I have no hope, have exhausted my options, and have nowhere to go from here.

Please anyone advise me on what to do. I did call Johns Hopkins for any internist or any ENDO, long ago.
First appt I could get is July 5th 2018. I called March 31, 2018.

Senior Member

@starlily88 So sorry for all that you're struggling with. That's too much to handle! I can't help you with most of it except for the thyroid stuff as I have a thyroid condition. My understanding of thyroiditis is that it can cause a temporary phase of hyperthyroidism (which can cause the elevated body temperature and heart rate), sometimes followed by a period of hypothyroidism, after which it spontaneously resolves in several months.

When your endo referred to "leaking", he probably meant that your inflamed thyroid is leaking extra hormone into your blood stream. Unfortunately, anti-thyroid meds can't help with this because they work by inhibiting your thyroid from producing new hormone, but do nothing to prevent it from leaking already-formed hormone. If you do have thyroiditis, it will take several weeks for your thyroid to leak out all of its store of formed hormone, after which you may go temporarily hypothyroid before you return to normal. Here's more information on subacute thyroidits: https://www.merckmanuals.com/profes...orders/thyroid-disorders/subacute-thyroiditis.

The beta-blocker can help with the elevated heart rate, but you do have to be careful because it can also lower your blood pressure, and yes they do usually make you more tired. When I've taken them, they make my legs heavy and I can't walk as far without needing to rest.

It's unfortunate your endo didn't fully explain subacute thyroiditis. If that is your correct diagnosis, you will need to be patient over the next several months until it resolves. Expect a temporary hyperthyroid period with elevated body temperature and heart rate which you can alleviate as needed with the beta blocker, followed potentially by a temporary hypothroid period which you can take low-dose synthroid for if it becomes too severe.

Senior Member

The doctor definitely sounds nasty. Terrible patient relationship. Doctors are supposed to listen to the patient, not force them to do things they aren't up to doing. Some doctors are okay with patients asking questions; others hate it and discourage it.

I can't think of any suggestions, since I'm clueless about the US medical system. Sounds nightmarish.

Baltimore is twice the size of my city. Surely there are more than 3 endos in your city who are taking on new patients, unless there is some kind of a severe endo shortage. I checked, and it looks like there are 30 endos in my city and 100 in yours.

Here is what has worked for me in terms of finding doctors - I sort of lucked into getting into the University of Cincinnati health care system. They also have a teaching hospital, which means they can handle complex things that other hospitals might not be able to.

It looks like the University of Maryland medical system might be the equivalent in your city.

Anyway, I had found a functional medicine doctor in the university system who was also my GP (pretty difficult to find). Then she decided to go full time into functional medicine which meant I had to find a new GP. I asked her for who would be good for my situation, and she gave me a couple of names. She said they would refer patients to her, which meant they had some kind of knowledge and respect for functional medicine.

I checked out the doctors she suggested on Health Grades, WebMD, and Vitals doctor rating websites. You can get a good idea as to what other patients think about them and their "bedside manner" before meeting them. I made my final selection based on that.

So when I talked to my new GP, I found out she has a handful of other ME/CFS patients, and she was happy to receive the Physicians Primer for ME-ICC (International Consensus Criteria for ME). And she's been sensitive to my needs as far as not tolerating chemicals and so forth.

Then if I need a specialist, she can refer me to other docs in the system, which is a very large system. I also check out the specialists on the doctor rating sites before hand, so I don't get a low rated one.

The university system also has several locations around the city, one of which is pretty close to me. They also have an online portal with your medical records, and you can make appointments and ask the doctor questions.

Also, if you're below a certain financial limit, you can apply for financial assistance and they will take care of anything that Medicare doesn't pay.

Senior Member

@starlily88 So sorry for all that you're struggling with. That's too much to handle! I can't help you with most of it except for the thyroid stuff as I have a thyroid condition. My understanding of thyroiditis is that it can cause a temporary phase of hyperthyroidism (which can cause the elevated body temperature and heart rate), sometimes followed by a period of hypothyroidism, after which it spontaneously resolves in several months.

When your endo referred to "leaking", he probably meant that your inflamed thyroid is leaking extra hormone into your blood stream. Unfortunately, anti-thyroid meds can't help with this because they work by inhibiting your thyroid from producing new hormone, but do nothing to prevent it from leaking already-formed hormone. If you do have thyroiditis, it will take several weeks for your thyroid to leak out all of its store of formed hormone, after which you may go temporarily hypothyroid before you return to normal. Here's more information on subacute thyroidits: https://www.merckmanuals.com/profes...orders/thyroid-disorders/subacute-thyroiditis.

The beta-blocker can help with the elevated heart rate, but you do have to be careful because it can also lower your blood pressure, and yes they do usually make you more tired. When I've taken them, they make my legs heavy and I can't walk as far without needing to rest.

It's unfortunate your endo didn't fully explain subacute thyroiditis. If that is your correct diagnosis, you will need to be patient over the next several months until it resolves. Expect a temporary hyperthyroid period with elevated body temperature and heart rate which you can alleviate as needed with the beta blocker, followed potentially by a temporary hypothroid period which you can take low-dose synthroid for if it becomes too severe.

Thank you so much for your response mrquasar. I read your posts on being rushed to hospital with Grave's disease, and all the hyper/hypo thyroid......... So very sorry. I don't think I explained the distress I have been going thru since March 21st - like you say - having an "extra" disease pop up on top of a relentless chronic disease is just too much to bear

I write down my heart rate each time my ENDO takes it - I assume this is my pulse. It has never been high.
Thanks for explaining "leaking" btw.

OK onto subacute thyroiditis. I did do the ReUptake Scan 15 years ago.
My ENDO never discussed it with me. He told me I had subacute thyroiditis caused by a virus, no treatment available, and checks it 4 times/year - then says" well you still have subacute thyroiditis" And it hurts!

It states in med journals that subacute thyroiditis lasts no longer than 13 - 18 months max.
Yet he told me mine has been active for last 15 years

So April 9th I asked him why do I have mine for 15 years?? He would not answer.
Online it says that the subacute thyroiditis then changes to hyperthyroiditis for a bit, then turns into hypothyroid.

So on April 9th 2018 my ENDO ordered me to do another ReUPtake Scan with Radioactive pill.
I told him I did not want to take this again - as he already knows I have subacute thyroiditis.
He offered no explanation at all - leaving me quite confused.
I told him what more information would this tell him - he just stared at me (and I was very polite because he is kind, empathetic but this was first time I was confused).

See my ENDO never ever explained why my dr friends tell me that one does not have subacute thyroiditis for 15 years straight - that it does change to hyper, then hypo. He says the Scan will show him more> So I ask - show you more of what? No answer..

You even say that it will take a few months or so to resolve - According to my ENDO mine has never resolved and is entering its 16th year

In addition I have HIGH blood pressure for years - My ENDO put me on Cozaar 50 mg/day, then increased it to
100 mg/day. My pressure at his office is always the same 90/70 - which is good.
My internist told me that if I take a BETA blocker - along with Cozaar - (Atenolol 25 mg/day) my blood pressure will drop precipitously to a dangerous low. He said it could make me pass out, loose consciousness.

I just checked out your URL on subacute thyroiditis just now, thanks.
See it says that this resolves in couple of months - and is treated with Corticosteroids (can't take NSIADS)
I was never in last 15 years treated with anything - and have always been in pain.
But nothing like last 3 months - this thyroid pain is beyond pain - it is constant, unbearable, and only calmed down
a bit halfway thru my Prednisone of 14 days.

Your article states for subacute thyroiditis treatment should be 3/4 weeks Prednisone.(corticosteroid).
He put me on Prednisone 14 days - I did not get relief till the 5th day - and it was minimal.
As soon as I stopped Prednisone - 5 days later - my temperature was even higher, and harder to control,
my throat felt like it was closing, I could not swallow without extreme pain, then I had a much worse ear ache, which I still have. I was worse than before I took it.
I have been just getting worse as time marches on.

Thanks for your support - I am hoping that you get better. Sounds like you have been thru the mill
Starlily88

Senior Member

@starlily88 I am so sorry to hear what a rotten time you are having. It sounds really grim. I can't help with the thyroid info, but will say your pulse pressure of 20 is terribly low and you will find it almost impossible to function on your feet and stay conscious. Pulse pressure (difference between systolic and diastolic ) should be 40. It is only half of what it should be. Are you hypovolaemic? I know it is found that people with ME may have as little as 60% of blood volume.

Senior Member

Baltimore is twice the size of my city. Surely there are more than 3 endos in your city who are taking on new patients, unless there is some kind of a severe endo shortage. I checked, and it looks like there are 30 endos in my city and 100 in yours.

Here is what has worked for me in terms of finding doctors - I sort of lucked into getting into the University of Cincinnati health care system. They also have a teaching hospital, which means they can handle complex things that other hospitals might not be able to.

It looks like the University of Maryland medical system might be the equivalent in your city.

Anyway, I had found a functional medicine doctor in the university system who was also my GP (pretty difficult to find). Then she decided to go full time into functional medicine which meant I had to find a new GP. I asked her for who would be good for my situation, and she gave me a couple of names. She said they would refer patients to her, which meant they had some kind of knowledge and respect for functional medicine.

I checked out the doctors she suggested on Health Grades, WebMD, and Vitals doctor rating websites. You can get a good idea as to what other patients think about them and their "bedside manner" before meeting them. I made my final selection based on that.

So when I talked to my new GP, I found out she has a handful of other ME/CFS patients, and she was happy to receive the Physicians Primer for ME-ICC (International Consensus Criteria for ME). And she's been sensitive to my needs as far as not tolerating chemicals and so forth.

Then if I need a specialist, she can refer me to other docs in the system, which is a very large system. I also check out the specialists on the doctor rating sites before hand, so I don't get a low rated one.

The university system also has several locations around the city, one of which is pretty close to me. They also have an online portal with your medical records, and you can make appointments and ask the doctor questions.

Also, if you're below a certain financial limit, you can apply for financial assistance and they will take care of anything that Medicare doesn't pay.

Thanks so much Caledonia. Yes there is a shortage of ENDOs in the states. I veer away from Univ of MD as it is downtown and right in the heart of the biggest drug dealers in the city. It is a trauma center so all the gun shot wounds are flown there. There are shootings right at the parking lot.

But I do go to Hopkins. I did make an appt with an ENDO there months ago - first opening was July 5th.
All the private ENDOs I reviewed did not have good CVs. The greatest ENDOs I know have retired.
My ENDO is quite well known here and I have been with him 25 years.
The problem is I lost my Internist April 1st - and now home bound so am too weak to see a new internist.

But like you I stick to ENDOs in teaching hospitals I have an online portal with all my Hopkins test results, appts, very convenient. I can change appts, send msgs to drs, etc.

What is the Physicians Primer for ME-ICC? Could you send an URL to me? Thanks a lot for your support.
Remember I have no idea if my new illness is Endrocrine problem - I have asthma now so need a pulmonologist.
And I went to my ENT for exam - for my larynx, vocal chords.
yes I have had thyroiditis for last 15 years - but my ENDO told me there are no meds to help me.

Senior Member

Thank you so much for your response mrquasar. I read your posts on being rushed to hospital with Grave's disease, and all the hyper/hypo thyroid......... So very sorry. I don't think I explained the distress I have been going thru since March 21st - like you say - having an "extra" disease pop up on top of a relentless chronic disease is just too much to bear

I write down my heart rate each time my ENDO takes it - I assume this is my pulse. It has never been high.
Thanks for explaining "leaking" btw.

OK onto subacute thyroiditis. I did do the ReUptake Scan 15 years ago.
My ENDO never discussed it with me. He told me I had subacute thyroiditis caused by a virus, no treatment available, and checks it 4 times/year - then says" well you still have subacute thyroiditis" And it hurts!

It states in med journals that subacute thyroiditis lasts no longer than 13 - 18 months max.
Yet he told me mine has been active for last 15 years

So April 9th I asked him why do I have mine for 15 years?? He would not answer.
Online it says that the subacute thyroiditis then changes to hyperthyroiditis for a bit, then turns into hypothyroid.

So on April 9th 2018 my ENDO ordered me to do another ReUPtake Scan with Radioactive pill.
I told him I did not want to take this again - as he already knows I have subacute thyroiditis.
He offered no explanation at all - leaving me quite confused.
I told him what more information would this tell him - he just stared at me (and I was very polite because he is kind, empathetic but this was first time I was confused).

See my ENDO never ever explained why my dr friends tell me that one does not have subacute thyroiditis for 15 years straight - that it does change to hyper, then hypo. He says the Scan will show him more> So I ask - show you more of what? No answer..

You even say that it will take a few months or so to resolve - According to my ENDO mine has never resolved and is entering its 16th year

In addition I have HIGH blood pressure for years - My ENDO put me on Cozaar 50 mg/day, then increased it to
100 mg/day. My pressure at his office is always the same 90/70 - which is good.
My internist told me that if I take a BETA blocker - along with Cozaar - (Atenolol 25 mg/day) my blood pressure will drop precipitously to a dangerous low. He said it could make me pass out, loose consciousness.

I just checked out your URL on subacute thyroiditis just now, thanks.
See it says that this resolves in couple of months - and is treated with Corticosteroids (can't take NSIADS)
I was never in last 15 years treated with anything - and have always been in pain.
But nothing like last 3 months - this thyroid pain is beyond pain - it is constant, unbearable, and only calmed down
a bit halfway thru my Prednisone of 14 days.

Your article states for subacute thyroiditis treatment should be 3/4 weeks Prednisone.(corticosteroid).
He put me on Prednisone 14 days - I did not get relief till the 5th day - and it was minimal.
As soon as I stopped Prednisone - 5 days later - my temperature was even higher, and harder to control,
my throat felt like it was closing, I could not swallow without extreme pain, then I had a much worse ear ache, which I still have. I was worse than before I took it.
I have been just getting worse as time marches on.

Thanks for your support - I am hoping that you get better. Sounds like you have been thru the mill
Starlily88

Okay so you are definitely hyperthyroid with the high FT3 and FT4. My impression from the article was that subacute thyroiditis cannot last for years either. It actually gave the impression that the inflammatory process damages the thyroid cells so if anything you should have gone into hypo long ago if this was a chronic thing. Have you for sure ruled out a toxic nodule (done via ultrasound + radioactive iodine uptake) or Grave's disease (positive TSI antibody + radioactive iodine uptake)?

I would definitely get a new endo if I were you. My endo has been very helpful through this process and explained everything in detail to me. In my non-professional opinion, your case does not sound like subacute thyroiditis. You need to get re-evaluated to rule out Grave's disease or a toxic nodule. The radioactive iodine uptake scan is important for figuring out what is making you hyperthyroid. If it shows that your thyroid itself is overactive (not just leaking too much hormone but actually producing too much as well), then you can be put on an anti-thyroid medication and start feeling some relief.

You said you were first diagnosed with thyroiditis 15 years ago. What symptoms were you experiencing then? Did you have the neck pain and swelling or not until recently? The steroids should help with the neck pain. Reasonably it would make sense for them to try you on steroids for a longer period *if the diagnosis of subacute thyroiditis was confirmed*, and honestly if it's not responding you could ask for surgery to remove the thyroid. If you've had 15 years of pain that's not manageable I think that would be a reasonable option. You would also have this option or the radioactive iodine pill if your diagnosis ended up changing to Grave's disease or toxic nodule.

So you do still have treatment options to explore, but it all hinges on having an accurate diagnosis and a skilled endocrinologist who can make that diagnosis. You said you've been reading my posts. Well, I'm now two weeks out from my radioactive iodine pill and despite my griping, I'm starting to feel much better. I no longer have the nausea and overheating spells I was having every day.

So there is relief in sight for you but you do need to do the tests and preferably with a new endocrinologist. Once you get the proper diagnosis you can start on the path to healing.

Senior Member

@starlily88 I am so sorry to hear what a rotten time you are having. It sounds really grim. I can't help with the thyroid info, but will say your pulse pressure of 20 is terribly low and you will find it almost impossible to function on your feet and stay conscious. Pulse pressure (difference between systolic and diastolic ) should be 40. It is only half of what it should be. Are you hypovolaemic? I know it is found that people with ME may have as little as 60% of blood volume.

Thanks Countrygirl. Didn't understand pulse pressure - so difference between my Systolic/Diastolic.
Funny thing is my ENDO has nurse take it first - then he takes it after 20 minutes while we are talking, then he takes it a 3rd time. I think he must have a super expensive BP cuff - because even at my Internist office I am higher.
I am higher everywhere I go - but I feel very calm at his office.

At the ER hospital on Monday May 28th - it was 109/74, is that better? I was super dehydrated, and there is shortage of saline in states - so I am still quite dehydrated. So that is making me even weaker.

I only notice BP when I am rushed to ER - then it seems to be much higher, shocks me, but under distress it rises.

Yes my internist was quite upset my ENDO raised my BP med from 50 mg to 100 mg few years ago.
He told me often it was too low - but my ENDO's speciality is BP - which is why I was sent to him.

I know you are right - and I feel so dumb - because all of this is making me feel so weak.
What is Hypovolaemic? I have anemia - I need an iron infusion, which is making me weaker too.

I just called my ENDO office - told his assistant that my BP is quite low - so how can I add another BP medicine
Atenolol 25 mg/day to this - my BP will be so low I will pass out. I don't get how he can not get how low my Blood pressure will go when he adds a beta blocker (which controls Blood Pressure) for my thyroid?

So I told my pharmacy to not fill it - because I am too scared.
Loosing my Internist could not have come at a worse time

Thanks Countrygirl for your support - gives me something to think about.
Seeing new ENDO now - having ACTH test Wednesday - I will bring this up to him!!
Starlily88

Senior Member

Okay so you are definitely hyperthyroid with the high FT3 and FT4. My impression from the article was that subacute thyroiditis cannot last for years either. It actually gave the impression that the inflammatory process damages the thyroid cells so if anything you should have gone into hypo long ago if this was a chronic thing. Have you for sure ruled out a toxic nodule (done via ultrasound + radioactive iodine uptake) or Grave's disease (positive TSI antibody + radioactive iodine uptake)?

I would definitely get a new endo if I were you. My endo has been very helpful through this process and explained everything in detail to me. In my non-professional opinion, your case does not sound like subacute thyroiditis. You need to get re-evaluated to rule out Grave's disease or a toxic nodule. The radioactive iodine uptake scan is important for figuring out what is making you hyperthyroid. If it shows that your thyroid itself is overactive (not just leaking too much hormone but actually producing too much as well), then you can be put on an anti-thyroid medication and start feeling some relief.

You said you were first diagnosed with thyroiditis 15 years ago. What symptoms were you experiencing then? Did you have the neck pain and swelling or not until recently? The steroids should help with the neck pain. Reasonably it would make sense for them to try you on steroids for a longer period *if the diagnosis of subacute thyroiditis was confirmed*, and honestly if it's not responding you could ask for surgery to remove the thyroid. If you've had 15 years of pain that's not manageable I think that would be a reasonable option. You would also have this option or the radioactive iodine pill if your diagnosis ended up changing to Grave's disease or toxic nodule.

So you do still have treatment options to explore, but it all hinges on having an accurate diagnosis and a skilled endocrinologist who can make that diagnosis. You said you've been reading my posts. Well, I'm now two weeks out from my radioactive iodine pill and despite my griping, I'm starting to feel much better. I no longer have the nausea and overheating spells I was having every day.

So there is relief in sight for you but you do need to do the tests and preferably with a new endocrinologist. Once you get the proper diagnosis you can start on the path to healing.

I did get a new ENDO - this is the dr I saw on May 31st. He is the cruel dr I am talking about.
He is doing ACTH test on me this Wednesday.
I also have appt with another ENDO on July 5th.
I suppose I should make a 3rd appt with an ENDO since I need a kind dr who will explain things to me!!

Can you explain to me "rule out a toxic nodule" or Grave's disease. I don't understand - I begged my ENDO
for a thyroid ultrasound - he said it would not show anything, waste of time.

No one cares about if I have a nodule in my thyroid - my ENDO that I will now leave for sure - would not let me have a thyroid ultrasound. I wanted to rule out any growths, but he said it shows nothing at all, waste of time.

I assumed my ACTH test on Wednesday will show if I have Addison's disease or Grave's disease.
It will show if I have primary adrenal insufficiency or secondary adrenal insufficiency.

Fifteen years ago - my ENDO was examining me - checked my thyroid made me swallow water, etc - this is when he asked me to take ReUptake Scan. No, I had no symptoms at all.
After the scan he sent me article about subacute thyroiditis, and left me msg that I had this.

So it hurts when he palpitates my thyroid - but never had pain unless I hit it, pressed it, or wore turtlenecks.
This is different - the pain exists all the time without touching it - I assumed it was muscular until my ENDO told
me I was 2 -3 times more swollen.

If you can - please explain about the nodules (why can't I do plain ultrasound) and why the Grave's disease wouldn't show up on a regular Thyroid ReUptake Scan? Sorry I am not comprehending this.
Thanks Starlly88
PS Also I did not run a high fever every day for months and suddenly can't stop coughing, and can't stop wheezing
I have headaches every day that won't stop - so maybe it is just CFS infecting my thyroid again

Moderator

Starlily....I am sorry I can't offer any advice to help you. I have almost zero knowledge of these things. But I am really sorry you got some doctor who was so grumpy with you. It makes me wonder if some of them are still stuck in the notion that ME/CFS isn't a "real disease". That is a bad excuse they make and it's only because it has them stumped!

What he said to you "I need a PHd to understand your medical issues" (or similar)....is a clue.
They can't figure it out and that is probably because the research and study of it doesn't receive enough of that thing they call "funding"!

Anyway, I empathise. My doctor is a nice guy but even he got me a referral to see a neurologist....guess what? 4 months from now! At the time I was certain I wouldn't even make another 4 months on this Earth.
It's all very different when we can see a private doctor, or afford a Naturopath or someone who specialises in M.E.

Senior Member

Starlily....I am sorry I can't offer any advice to help you. I have almost zero knowledge of these things. But I am really sorry you got some doctor who was so grumpy with you. It makes me wonder if some of them are still stuck in the notion that ME/CFS isn't a "real disease". That is a bad excuse they make and it's only because it has them stumped!

What he said to you "I need a PHd to understand your medical issues" (or similar)....is a clue.
They can't figure it out and that is probably because the research and study of it doesn't receive enough of that thing they call "funding"!

Anyway, I empathise. My doctor is a nice guy but even he got me a referral to see a neurologist....guess what? 4 months from now! At the time I was certain I wouldn't even make another 4 months on this Earth.
It's all very different when we can see a private doctor, or afford a Naturopath or someone who specialises in M.E.

Welcome WolfCub to Phoenix Rising Don't worry about no advice, just nice to know you support me.

I knew he was off when I gave him my blood work on my thyroid, CBC, iron panel - and he got so aggravated, and said "I will have to study these another time" Don't think it is about lack of funding - when I first got sick - went to GP I did not know - he was in building I worked in.

He did not have a clue about CFS. He called Dr Goldstein in San Francisco - at his Chronic Fatigue Clinic.
He read his book - consulted with him. He researched this disease so much that so many CFS people started coming to him - but he was determined to figure it out, in any way he could. Any dr that cares about patients will always go the extra mile - because they see that we are so sick - and they have to help

Senior Member

Blood volume, the total amount of blood in your body, cannot be measured with a CBC. In fact, the interpretation of CBC results is based on the assumption that a patient has a normal volume of blood.

Typically low blood volume (hypovolemia) is the result of trauma (bleeding), but chronic low blood volume has been found in CFS patients as well. It is not well understood and most doctors would not automatically think of it as a possibility.

Testing for it is difficult to arrange. Most hospitals won't do that test.
I was diagnosed hypovolemic without the test just based on my symptoms and history of low blood pressure.

I'm not knowledgeable enough on this subject to know if high blood pressure is possible with low blood volume. They seem contradictory to me.

Senior Member

Blood volume, the total amount of blood in your body, cannot be measured with a CBC. In fact, the interpretation of CBC results is based on the assumption that a patient has a normal volume of blood.

Typically low blood volume (hypovolemia) is the result of trauma (bleeding), but chronic low blood volume has been found in CFS patients as well. It is not well understood and most doctors would not automatically think of it as a possibility.

Testing for it is difficult to arrange. Most hospitals won't do that test.
I was diagnosed hypovolemic without the test just based on my symptoms and history of low blood pressure.

I'm not knowledgeable enough on this subject to know if high blood pressure is possible with low blood volume. They seem contradictory to me.

Thanks so much for your explanation!
To all on here - thanks so much for your help in my "illness"
Last night I got fever again - only 101 degrees, can't stop coughing/wheezing, have not slept in 48 hours - I just can't fall asleep.

Cancelled the ACTH test for Wednesday with Nasty dr - not worth it. Now that I see one of you got side effects for a week or more - my body can't handle more stress on it - so until I get to a Pulmonologist and a new ENDO - just staying home. Starlily88

Senior Member

I did get a new ENDO - this is the dr I saw on May 31st. He is the cruel dr I am talking about.
He is doing ACTH test on me this Wednesday.
I also have appt with another ENDO on July 5th.
I suppose I should make a 3rd appt with an ENDO since I need a kind dr who will explain things to me!!

Can you explain to me "rule out a toxic nodule" or Grave's disease. I don't understand - I begged my ENDO
for a thyroid ultrasound - he said it would not show anything, waste of time.

No one cares about if I have a nodule in my thyroid - my ENDO that I will now leave for sure - would not let me have a thyroid ultrasound. I wanted to rule out any growths, but he said it shows nothing at all, waste of time.

I assumed my ACTH test on Wednesday will show if I have Addison's disease or Grave's disease.
It will show if I have primary adrenal insufficiency or secondary adrenal insufficiency.

Fifteen years ago - my ENDO was examining me - checked my thyroid made me swallow water, etc - this is when he asked me to take ReUptake Scan. No, I had no symptoms at all.
After the scan he sent me article about subacute thyroiditis, and left me msg that I had this.

So it hurts when he palpitates my thyroid - but never had pain unless I hit it, pressed it, or wore turtlenecks.
This is different - the pain exists all the time without touching it - I assumed it was muscular until my ENDO told
me I was 2 -3 times more swollen.

If you can - please explain about the nodules (why can't I do plain ultrasound) and why the Grave's disease wouldn't show up on a regular Thyroid ReUptake Scan? Sorry I am not comprehending this.
Thanks Starlly88
PS Also I did not run a high fever every day for months and suddenly can't stop coughing, and can't stop wheezing
I have headaches every day that won't stop - so maybe it is just CFS infecting my thyroid again

There are only a few things that can cause hyperthyroidism, which you currently have. Grave's disease is an autoimmune form where your body produces an antibody that the thyroid mistakes for TSH, thus stimulating it to produce excessive thyroid hormones. This endocrinologist can test for this antibody easily. You are correct that it should have shown up as increased activity on your first radioactive uptake scan, so it sounds like you at least didn't have it back then, and may not now. A thyroid nodule is a lump of thyroid tissue that has become overactive. The thyroid ultrasound can help rule out a nodule, but the radioactive uptake scan would really give the most information about how your thyroid is currently functioning. This would help direct appropriate treatment.

Thanks so much for your explanation!
To all on here - thanks so much for your help in my "illness"
Last night I got fever again - only 101 degrees, can't stop coughing/wheezing, have not slept in 48 hours - I just can't fall asleep.

Cancelled the ACTH test for Wednesday with Nasty dr - not worth it. Now that I see one of you got side effects for a week or more - my body can't handle more stress on it - so until I get to a Pulmonologist and a new ENDO - just staying home. Starlily88

Insomnia is one of the symptoms of hyperthyroidism. Unfortunately as long as you have excessively high FT3 and FT4, you're going to have hyperthyroid symptoms and feel pretty rotten. That's why it's so important to get a correct diagnosis so you can get proper treatment.

The beta blocker can relieve most of the hyperthyroid symptoms. I've used propranolol, and read that it's more effective than atenolol. But they both do lower your heart rate and blood pressure so you may not be able to tolerate them since you're on blood pressure medication. I would be very cautious trying them out until you see how your body reacts.

Senior Member

I'm sorry to hear of all you are going through. I can't help with much, except I have asthma. Were you put on a maintenance inhaler? Do you have a rescue inhaler? A nebulizer? Prescription asthma / allergy med taken nightly (Singulair)?

But I do go to Hopkins. I did make an appt with an ENDO there months ago - first opening was July 5th.
All the private ENDOs I reviewed did not have good CVs. The greatest ENDOs I know have retired.
My ENDO is quite well known here and I have been with him 25 years.
The problem is I lost my Internist April 1st - and now home bound so am too weak to see a new internist.

But like you I stick to ENDOs in teaching hospitals I have an online portal with all my Hopkins test results, appts, very convenient. I can change appts, send msgs to drs, etc.

I asked my new doc first if she would like to receive clinicians info about ME and she said yes (good sign). Then I brought it at my next appointment. She actually skimmed through it and asked me a few questions at the appointment and seemed genuinely happy to receive it.

I did it that way vs. foisting it upon her at our first meeting, so it was more casual and not too pushy.

Senior Member

Oh @starlily88 , I can't believe how badly your doctors speak to you. I hate to think of you stuck outside your apartment unable to get in without help and I want to phone up all your doctors and tell them off. I can't offer any advice as i don't know anything about thyroid problems but heres a virtual hug. i am so grateful to just have the one chronic health condition.

Senior Member

There are only a few things that can cause hyperthyroidism, which you currently have. Grave's disease is an autoimmune form where your body produces an antibody that the thyroid mistakes for TSH, thus stimulating it to produce excessive thyroid hormones. This endocrinologist can test for this antibody easily. You are correct that it should have shown up as increased activity on your first radioactive uptake scan, so it sounds like you at least didn't have it back then, and may not now. A thyroid nodule is a lump of thyroid tissue that has become overactive. The thyroid ultrasound can help rule out a nodule, but the radioactive uptake scan would really give the most information about how your thyroid is currently functioning. This would help direct appropriate treatment.

Insomnia is one of the symptoms of hyperthyroidism. Unfortunately as long as you have excessively high FT3 and FT4, you're going to have hyperthyroid symptoms and feel pretty rotten. That's why it's so important to get a correct diagnosis so you can get proper treatment.

The beta blocker can relieve most of the hyperthyroid symptoms. I've used propranolol, and read that it's more effective than atenolol. But they both do lower your heart rate and blood pressure so you may not be able to tolerate them since you're on blood pressure medication. I would be very cautious trying them out until you see how your body reacts.

I have now been awake for over 48 hrs Today was awful for me. My ENDO of 25 years is insisting that I return to lab - he wants to repeat T3 Free T4 Free TSH and SED rate!
Reason - wants to see if I still have hyperthyroid! Wants to see if I have hypothyroid now.
Remember my labs were done May 15th. This is 3 weeks ago

I called his office multiple times - asked his nurse about taking Atenolol with 100 mg Losartan Potassium (Cozaar).
My heart rate was 20 points lower last Monday in the ER so not high, my BP was even low. Normally in ER my
BP, heart rate all high due to pain.

I asked his nurse to FAX the blood order to the lab. She said "I will fax it as soon as we hang up"
I called the lab to see if it came - 30 minutes later. NOPE!!!
Then guy at lab called my ENDO. Hours later he told me fax came.

He had made up story to nurse at ENDO - said I was in the lab very weak for 1/2 hour, where was Fax?
Fax came 10 seconds later. He told me he knew they would never send the Fax without fabricating a story.

I explained to ENDO nurse that taking Beta Blocker and my BP med might lower me too much. She agreed, asked me to NOT take the beta blocker. She would ask my dr about changing dosage amount. She never called me back And she never will.

Quaser I have old Verapamil (beta blocker) 40 mg. It is not new, but sort of freaking out that I will never sleep.
Do you think I should try one? I am desperate - I am just getting worse.

I did read that with Hyperthyroidism there is one drug used - dr has to take blood tests to level it out.
It does correct they Hyper in a month or 2. Forgot name.

I am going to do the Thyroid Uptake Scan I 123.
Can't do IODINE for the graves disease - am allergic to iodine - go into Anaphylatic shock.
Suppose I can take preventive steroids day before - but might this mess the test up?

I did 2 ANTI-BODY blood work - Thyroglobulin antibody and Thyroperoxidase TPO Antibody. Bit low but in range.
At this point I need an Internist - it is obvious that my ENDO is out,and mean guy, who knows. I always have
July 5th (like Casablanca) ENDO at Hopkins.